Monday, February 28, 2011

I was reading some scriptures the other day and I read this one that had never been particularly meaningful to me before. It's Mosiah 16:8 "But there is a resurrection, therefore the grave hath no victory and the sting of death is swallowed up in Christ." (If you're wondering where this Mosiah is, you can check this out http://www.mormon.org/book-of-mormon/) I love how that's worded - the sting of death is swallowed up in Christ. It's exactly how I feel. People wonder how it is knowing my daughter is going to die young and I never know what to say exactly. I know I'm going to miss Cicily terribly. I know I'll be happy thinking about how she's no longer bound to her painful, ill-functioning body. But I know that her spirit, the essence of who Cicily is, will one day be reunited with her body as she is resurrected. And her resurrected body will be perfect and she will be able to tell me exactly what made her sad that one day when she was 4 years old and couldn't explain it to me. (I've imagined our long talks - Mom, what were you thinking making me use those glasses - they didn't help a bit, etc. And hopefully - Mom, thank you for making my dolls do goofy things to make me giggle, etc.)So at times when I start to worry about how I'll miss seeing my Cicily smile and how it will sting a lot to not have her in our home, I think about that sting being swallowed up in Christ. I know Jesus Christ died and was resurrected. I know it was not an easy thing for Him to do. He did it for us. It makes me feel like I can face the not easy thing of having my Cicily gone from me, because, "the grave hath no victory...the sting of death is swallowed up in Christ" for me and for my Cicily.

Hi, it's me - Cicily's Mom. I also go by Janalyn, but I like being known as Cicily's Mom.When I started this blog for Cis, she was a baby. I just felt like her little story should be told. I always considered this blog to be Cicily's blog; never mine or our family's. I thought maybe when she got older she could start making her own blog entries and writing her own story. Since she likely won't be doing that, and I feel like some of my story as Cicily's Mom should be told, I'm going to talk more about myself and what it's like to be Cicily's Mom. (Some of you may wonder, doesn't she already do that? Well, I probably do more than I intended, but now I'm giving myself full-on permission :) )

New to Cicily's blog? Read some FAQs about Cicily:

Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.